My Partner`s AVM

[Steve]

My partner began having episodes of weak legs in January 2006. He would just collapse on the floor. Sometimes it was twice a day, and sometimes he would go a week without an episode, but it eventually became more frequent. His gait became more awkward and spastic. He stubbornly refused to mention it to his doctor.

By mid-May, he could barely walk. He finally told his doctor who set up an MRI. The MRI showed a white area in his spine at the top of the lumbar region, extending up into the thoracic region. The preliminary diagnosis was either a tumor, a VM or multiple sclerosis. He was sent immediately to see a neurosurgeon.

The neurosurgeon immediately admitted him to the hospital for further testing, where it was confirmed to be an AVM which they embolized.

The next morning he could not support himself on his feet, and fell trying to get from the portapotty back into the hospital bed. Still, the doctor said there was nothing else they could do except wait for the swelling to subside. That was expected to take two to three weeks, so they discharged him.

Getting him home and upstairs to our main living area took a combination of wheeled chairs, rugs, step stools and his sheer upper body strength as he hoisted himself up step-by-step on his butt up the stairs.

For the first week or two, I had to physically lift him from his chair to the sofa where he slept, and back. He had to wear adult diapers because he couldn't sense when he needed to urinate. He was severely constipated.

After the first couple weeks, he began to be able to support himself with a walker and could move himself to the portapotty situated next to his chair for bowel movements. But the need to urinate was still frequent and unpredictable. The best solution was to give him a plastic bottle to use, which he would pour into a larger container that I would empty when I got home from work and first thing in the morning.

Each day he continued to try to walk a little further with the walker, and by the fourth week after his embolization, he was able to walk with the walker to the guest bedroom on that level of the house to sleep at night. And we were able to move the portapotty into the bathroom over the toilet. Only once in all this time have his legs gone out from under him. His feet continue to swell during the day, but not nearly as badly as they were swelling when he first came home.

He spoke with his doctor during the third week, and after describing his current condition, the doctor felt he was right on target for recovery. Still we've become very discouraged over his lack of progress in the past two weeks. He still cannot walk without the walker, and does not feel that his legs are getting any stronger. He has to use his hands to lift his legs and put them into the bed or to raise them onto the foot stool (to reduce the swelling in his feet). Using a cane at this point is out of the question. He still has frequent small urinations, often coming on with a little exertion such as getting up out of his chair. He can stand on his own without the walker for 15-20 seconds albeit in a hunched over position, but he cannot move his feet with the support of the walker.

He's on FMLA leave, and only has six weeks left. At this point, it doesn't look like he'll be able to return to work by the time his FMLA runs out. After that, I don't know what we'll do without his health insurance. If he's not able to return to work by the time his FMLA runs out, then there will surely be more doctor and possibly hospital bills.

And based on the other stories I've read on this site and others, AVM recovery is simply not a matter of a few weeks as the doctor seemed to imply, but more like many, many months.

He has a follow-up appt on 6/20 with the doctor who did the embolization. I suspect the lack of progress may cause the doctor to suspect a bleeder and put him back in the hospital for further tests and possibly surgery. As yet, the doctor has prescribed no physical therapy of any kind; maybe it's premature at this stage.

One of the major frustrations for us has been getting anyone to explain how the recovery process should go and any kind of "normal" timeframe so we can guage his progress. Will the recovery be essentially a reverse timeline of things that happened leading up to the embolization? Should he expect to have frequent episodes of leg weakness that come more rarely over time and eventually stop all together? Should he be able to lift his legs without using his hands after 6 weeks? Shouldn't he have more bladder control by now? Should he be trying to walk more frequently or further each day? Or should he still be minimizing any exertion?

And what does one do when the primary caregiver (me) has to take a business trip? His only other relative is his near-90-year-old mother who can hardly see, and certainly wouldn't be able to lift him if he fell. I don't even know where to find answers to these questions, but they sure keep me awake at night.

Mike